He was diagnosed with prostate cancer this year and had a radical prostatectomy in late July. His starting PSA was 7.5 and he had gleason 4+5. He had a scan pre-surgery and they said the cancer was contained in the prostate.
He got his bloodwork back and unfortunately his PSA is now 1.21, when they were hoping for zero.
Following this he has a had a scan and the cancer nurse called today to say they found it in his pelvis (lymph nodes). She has said that there's nothing they can do, it's treatable and not curable. They said the cancer is 'more aggressive than they realised' though I thought with a combined gleason score of 9 they would have expected it to be aggressive? They said might have up to 5 years to live. They have told my dad to start hormone therapy.
My question is, is it worth getting a second opinion? I've heard that salvage radiation can be curative? Treatment so far has been on the UK national health service - NHS). He is based in London
It just seems so crazy that there is nothing that can be done...He is otherwise extremely healthy. Running half marathons before the diagnosis and even back running 4 weeks after the op....
Thank you for any info. It's a very sad and confusing time x
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Thank you so much. I am going to find out how we can get a consultation with David Dearnaley. Out of interest, do you know why the NHS are not forthcoming with offering this treatment in these cases?
It isn't standard of care. That article is about a study that suggests that salvage radiation to the pelvic lymph nodes + long-term ADT might be curative, but it isn't proven. Proof would require a randomized clinical trial, which hasn't been done. So this treatment is in the "gray zone" of treatments that hasn't met the strict standard of proof (that NHS may require), but hasn't been disproven either.
There was a randomized clinical trial that did prove that whole-pelvic salvage radiation (that included the pelvic lymph nodes) was more effective than if the radiation just targeted the prostate bed. But in that trial, the pelvic LN cancer was still too small to be detectable using CT:
Now, with improved PET scans (like the Axumin PET scan or the soon-to-be-approved PSMA PET scans) many more cancerous LNs will be detected at an earlier stage. It is also important that because of improved detection, the area to be treated with salvage radiation has recently been expanded.
I suggest that when you reach out to Dearnaley, you send him a link to the Touijer study and tell him that you would like to discuss whether your father can be treated with that protocol. His email is: david.dearnaley@icr.ac.uk
Thank you very much. I sent him an email this morning. Though I just checked on the ICR website and it says he retired in August this year... I am hoping he may be able to recommend a colleague if he gets back to me
Just an update, despite having retired, Dr Dearnaley sent me a very considered and thorough reply, suggesting that my dad see one of his old colleagues. So my dad is booked to see Dr Julia Murray on Monday. Thank you so much for the suggestion of contacting him
Hi again Tall_Allen . Thank you again for pointing me in the right direction of getting good treatment for my dad. He saw Dr Murray via the Royal Marsden for a 2nd opinion (recommended by Dr Dearnaley). She was a great help and he felt much more confident and positive about treatment there. Following that, we asked for him to be transferred from being treated at his local hospital, to being treated at the Marsden as it is a specialist centre. He also lost faith in his local hospital after numerous errors, cancelled appointments, and conflicting info. Dr Murray was fantastic and she even called me after her consultation with him to explain everything (I live abroad so couldn't attend). She has passed him onto an oncologist who works on the Marsden sight closes to where he lives. He is going to start radical radiotherapy to the prostate bed and lymph nodes, but needs to go in for a scan before they do this. My dad sent me a picture of the consent form filled out and I noticed that the oncologist has ticked 'cure of disease' on the 'intended benefits of treatment' form. This confused me as I had come to believe that stage 4 is not curable. I'm wondering if anyone can explain this to me? Thank you
Cure is the goal when the only cancer is in the pelvic lymph nodes and it is treated with whole pelvic radiation and long-term ADT. That is what seems to have happened in the Touijer study.
Currently they must be using it for very select cases, a sort of/part of clinical research/trials. Your father's case is not the usual recurrence after surgery. They may get interested in treating him, for as you wrote he has lymph node invasion verified by imaging. PSMA PET/CT is available at private clinics in London. I would have started from there.
Hi, hope dad responds well to treatment. You can look at my profile for my father's history with 5+4 Gleason score and metastatic disease. Even our first hospital and some staff told let's see 2-3 years,someone said maximum 5. We got second opinion and have been continuing there. Dad had many treatments , recurrence and PSA is on slight upward trend again but he has completed four and half years,going on very well with his physical activities daily and we still have more treatment options still open so whoever says given number of years surely does not know what they are talking. Each patient is different and there are lot of treatment options available. So hang on and do get second opinion.
Agree with Tall Allen and Nalakrats try and get a second opinion at Royal Marsden. I currently have raised PSA (currently 0.07) post unsuccessful prostate bed only radiation. The plan is to try and detect where it is. I am waiting until it can be detected in a scan. IF it is in the lymph nodes the plan is to see whether I can have further radiation and combo with ADT. I am am being monitored by the Marsden.
She was WAY out of bounds. ......I would have NEVER said that...that’s the MD’s job ..it’s just wrong period...🙄....
“ Nothing to be done”. ? Bull ! It is common for pc not to be all caught up front .. Radiation can finish it off! I’m not a doctor but ive see this all of the time here . He has stage#4 , so did I. I did double adt and imrt . No surgery . The horse was outta the barn I was told .. I did an orchiectomy allowing me to drop Lupron shots ,but I’m still on a pill form adt to date .. My urologist told us that i had 36 months to live ,no matter what i did ...I’ve been clear with no signs for over four years now .. we went on an all out health kick ,organic with many nutrients,we think this has helped ? Love him a lot . My wife’s love has kept me here .. He needs a strong reason to endure .. Your love is it . ❤️
That is OUTRAGEOUS for that nurse to have made that statement. She should be 'fired' for being so incompetent. -this is NOT an area where she should be allowed to practice.
I was diagnosed about 3 1/2 years ago with a similar staging G9 - advanced / aggressive - with ONE difference - I was also node positive - aka N1 classification / staging.
I've had the bone scans and CT scans (still 'clear') and I am very much alive and expect to remain in that state (alive) for many more years to come !
I was 'off medication' on 'vacation' for 2 1/2 years after having gone 'undetectable post treatment' - it is not uncommon, unfortunately, for some of us to see the cancer 'slowly' return - because 'something was missed' - statistically, about 50% of us will see that happen.
That is known as a BCR bio-chemical recurrence. That is NOT a death sentence.
I've had a BCR - recurrence - and will be tested with another diagnostic test - a PSMA/PET scan - an ultra sensitive scan - because they haven't found the source for the recurrence - assuming they find something, there are still treatment options for that.
YOU should go out of your way to REPORT this moron to the medical 'authorities'. This so called 'nurse' MUST be stopped in her tracks - YESTERDAY !
Although the 'cure' rate may be low for patients like us, that doesn't mean they (we) are going to die in 5 years !
I still can't believe I read what you've written !
Totally outrageous.
You should PRINT out these comments from THIS forum and show them to that moronic 'nurse', her colleagues and her superiors !
Wow, overwhelmed by all the responses and information here! Thank you so much to everyone who has responded, I have read all your posts and learned something new from each one. One thing that is clear is that we should definitely seek a second opinion...I am currently trying to get my dad seen by a consultant at The Royal Marsden for this. I will keep you posted. If anyone has any more information to share, it is all greatly appreciated xx
Your dad and my dad have the same fact pattern. We got the same news from his urologist and for the past 6 years, my dad has done all the hormone treatments, chemo, and radiation. Cancer in the lymph nodes could be controlled, it has worked for my dad for the past 5 years, until recently it has gone to his liver. I would recommend a very good oncologist and radiation oncologist they will help your dad battle the cancer.
Thank you for sharing I am sorry your dad's cancer has spread recently, but glad he has responded well to treatment so far. If you don't mind me asking, how have all the treatments impacted on his quality of life in the past 6 years? My dad is a very keen runner and I would hate to see it taken away from him. My best wishes to you and you dad x
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